Legislature(2003 - 2004)
03/03/2004 08:05 AM Senate JUD
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* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
SB 217-GENETIC PRIVACY
SENATOR DONNY OLSON, sponsor, told members he introduced SB 217
because current law does not adequately protect and define an
individual's right to his or her genetic information. Without
such protection, an individual and his or her blood relatives
could be abused.
CHAIR SEEKINS asked why the legislature should enact a bill that
restricts these activities for private industry but not for
government entities.
SENATOR OLSON said that is a good question, as many people are
apprehensive about the actions of government agencies. He
pointed out that [indisc.] and AS 09.65.070 pertain to
actionable claims against the state, and address everything not
covered in the exemptions in SB 217.
CHAIR SEEKINS expressed concern that the definition of "a
person" in the bill does not include a government agency. He
said he would not want the Department of Health and Social
Services (DHSS) to be able to collect DNA samples without the
same restrictions that will apply to an insurance company.
SENATOR OGAN concurred with Chair Seekins' analysis that "we
shouldn't necessarily trust the government just because we're
the government and we're here to help you." He recalled an
incident several years ago in which confidential criminal
background records of candidates were accessed by a public
employee during an election campaign and said the potential for
misuse is there.
CHAIR SEEKINS referred to paragraph 2, line 11, on page 1, and
noted that language makes a DNA sample and analysis the
exclusive property of a person. He doesn't want anyone to imply
that language applies except in the hands of a government
agency.
SENATOR FRENCH asked that a representative from DHSS explain to
the committee when and why it would use that information.
SENATOR OGAN referred to the private right of action section on
page 2, and suggested getting a legal interpretation of whether
or not a government agency would be included in the definition
of "a person."
SENATOR FRENCH said irrespective of whether an agency is at
fault, a right of action could be taken against an individual
who illegally sold or disclosed confidential information. The
next question would be whether the agency is immune to a lawsuit
if it adopted a policy of dissemination contrary to law.
CHAIR SEEKINS asked whether an employee would be immune from
disseminating information if the agency for which the person
worked is not restricted from disseminating that information.
SENATOR FRENCH said in his opinion, a statute trumps policy but
He suggested that DHSS brief the committee on its policies.
SENATOR OLSON reminded members that the intent of the bill is to
provide some type of protection to an individual regarding his
or her DNA information. He noted that although members' concerns
are valid, DHSS is not exempt from the informed consent
requirement, and the main point of SB 217 is to require informed
consent. He repeated that DHSS must get informed consent but
what happens afterward is not the focus of the bill; that should
be the focus of other legislation.
CHAIR SEEKINS asked if government agencies are not specified in
the bill for some structural reason.
SENATOR OLSON nodded no.
SENATOR THERRIAULT asked if another section of statute governs
the way a government agency would gather and handle that
information. He then expressed concern that the bill uses the
word "person" interchangeably to refer to an individual
collecting a sample and the person from which a sample is taken.
CHAIR SEEKINS commented that he completely agrees with the
concept behind SB 217 but is still concerned about plugging all
leaks to protect the individual's privacy.
SENATOR OLSON said no legislation can plug every leak. Regarding
Senator Therriault's concern, he noted other sections of statute
deal with actionable claims against the state. That arena is
very complex and convoluted. He expressed concern that getting
involved in that area would detract from what he is trying to do
in this bill.
SENATOR THERRIAULT asked if AS 44.41.035 addresses the
collection of a DNA sample to establish paternity by DHSS.
SENATOR OLSON said AS 44.41.035 deals with the law enforcement
exemptions.
SENATOR FRENCH commented that subsection (f) spells out the
restrictions on the people who collect this data and says the
DNA registration system is confidential and can only be used for
the reasons listed. He said the committee heard a fair amount of
testimony on this issue last year when it contemplated expanding
the number of crimes that DNA samples could be collected for.
DPS gave a good presentation at that time about how tightly that
information is tracked.
SENATOR OGAN asked if anyone was available to testify from the
Department of Law (DOL).
CHAIR SEEKINS said no one was present.
SENATOR OGAN noted, for the record, that he has noticed an
absence of anyone from DOL at the committee hearings this
session.
SENATOR FRENCH pointed out that SB 217 was written to hit 90
percent of the target and gives clear direction to the public
and the government about when informed consent is required to
obtain a DNA sample. He argued that he cannot imagine a
situation in which a government official could start selling DNA
samples to insurance companies but, if that did happen, a
lawsuit and employee firing would resolve the problem. He said
he believes this bill is ready to move out of committee.
CHAIR SEEKINS said he is trying to find peace with his concerns
about the bill.
SENATOR THERRIAULT said some of his concerns have been allayed
by the fact that other statutes speak to how a sample can be
collected and used. He asked, in reference to page 1, line 15,
what "other jurisdiction" encompasses and whether it covers a
local government or other state agencies.
SENATOR FRENCH replied:
If I were just speaking off the top of my head, I
would say it...would be a statute specifically dealing
with a DNA identification system and, moreover, it
would be a DNA identification system supervised by the
Department of Public Safety. If it were something more
like paternity or screening newborns or emergency
medical treatment, it would fall under the other
exceptions under subsection (b). So it would be a DNA
identification system and I would say either conducted
by the United States Government for their law
enforcement purposes or by another state.
SENATOR FRENCH thought it unlikely that it would apply to a
local government because no other local jurisdiction has DNA
identification systems for criminal justice purposes.
CHAIR SEEKINS thought "jurisdiction" could apply to a local
police department or a subdivision of state government with a
law enforcement unit.
SENATOR FRENCH disagreed as he thought that reading was too
broad.
CHAIR SEEKINS asked what a comparable provision would be.
SENATOR FRENCH said it must be comparable to AS 44.41.035, which
is about DNA identification for the purpose of public safety.
CHAIR SEEKINS said if the City of Fairbanks could collect a DNA
sample, it would.
SENATOR FRENCH said if it did, the sample would be sent to the
state crime lab for analysis and retention. The crime lab would
then send a report to the City of Fairbanks saying whether the
sample was a match taken at the crime scene.
CHAIR SEEKINS asked why "another jurisdiction" is included in
the bill if it is meaningless.
SENATOR OGAN suggested that it may have been included in case an
Alaskan city gets its own crime lab in the future.
CHAIR SEEKINS said he still feels that government should be
required to hold the information as private as anyone else.
SENATOR OLSON agreed.
CHAIR SEEKINS asked about the letter of intent.
SENATOR THERRIAULT said the sponsor was agreeable to [placing
the legislative findings and purpose section of the original
bill in] a letter of intent. He noted two corrections need to be
made to the letter of intent:
· Replace the word "has" with "have" on the first line
· Add an apostrophe to the end of the word "families" on line
2
SENATOR OLSON said the letter of intent is concise and focuses
on what he wants to do with the bill. He commented that the
field of biotechnology is getting more and more complicated so
it is important to get a handle on it now.
SENATOR OGAN said he supports moving the bill from committee
today.
CHAIR SEEKINS announced that he would take public testimony.
8:43 a.m.
MR. JOHN GEORGE, representing the American Council of Life
Insurers (ACLI), asked to clarify a few points made at the last
meeting regarding how insurance companies share health
information. The Division of Insurance is in the process of
adopting a privacy regulation. That model closely follows the
National Association of Insurance Commissioners' model and the
National Conference of Insurance Legislators' model. Those
bodies and the Division of Insurance recognize very specific
reasons to share health care and genetic information: claims
administration and adjustment, underwriting, guarantee fund
functions, reinsurance, risk and case management, quality
assurance for consumers, actuarial scientific grievance
procedures, internal administration and compliance, policyholder
services, and audits. The ACLI is concerned that if it cannot
share that information, it will be unable to fulfill its legal
obligations to policyholders and regulatory bodies. He said
insurance companies are very protective of health information.
Alaska would be the only state that requires a separate notice,
which would make it more difficult for insurers to do business
in Alaska. This bill would provide that if a person withdrew his
or her authorization, the insurance company would have to remove
it from the individual's file and destroy it. The insurance
company would then be unable to justify its rating
classification.
MR. GEORGE told members the ACLI is concerned about the
definitions of genetic testing and genetic analysis in the bill.
Those definitions are very broad and would include tests the
general public might not consider to be genetic tests but could
fall within the definition. The ACLI would prefer a narrower
definition to exclude specific test results that are collected
now. In addition, if a separate authorization is required, the
ACLI would prefer that it be drafted and approved by the
Division of Insurance rather than DHSS for the sake of
consistency.
SENATOR THERRIAULT asked for an example of a routine test that
would get swept into the definition in the bill.
MR. GEORGE said that Dr. Gleason of Northwest Mutual assured him
that definition would include iron levels in the blood. He added
that any blood test could potentially be a DNA test. He then
referred to a proposed amendment and read:
A genetic test does not mean a routine physical
measurement; a test for drugs, alcohol, cholesterol,
or HIV; a test performed for the purpose of diagnosing
or detecting disease, illness, impairment, or
disorder; or a chemical, blood, or urine analysis or
other test that is widely accepted and in use in
clinical practice.
He noted that Senator Olson might be better able to answer Chair
Seekins' question.
SENATOR THERRIAULT thought that a routine test would not be
considered to be a genetic test under the definition in the
bill.
CHAIR SEEKINS asked what will change if the definition in the
proposed amendment is adopted.
MR. GEORGE said people at the ACLI and medical doctors wrote the
definition from the member companies. He said he does not have
enough medical expertise to answer that question so again
deferred to Senator Olson.
SENATOR OLSON said he discussed with Dr. Gleason, a professional
consultant for the insurance industry, the definition of genetic
testing. He told members:
As you walk down this very complicated issue, you're
going to have people on one side and entities on the
other, whether it's the industry on one side and the
ACLU on the other, it's a very - quite a tightrope to
go ahead and get a handle on and that's the reason
for...[END OF SIDE A].
TAPE 04-13, SIDE B
...before we start getting off into a real complicated
biotechnological problem. Specifically, where I had
difficulty with the amendment related to the genetic
test was that the definition as compared to what's in
the bill starts to have a little bit of broader range
exemptions for the insurance industry than I was
willing to go ahead and take on. For example, as you
go ahead and look at some of the issues here, a test
performed for the purpose of ... where it says 'tests
performed for the purpose of diagnosing and detecting
diseases', and then compare that with the last
sentence...which is 'widely accepted for use in
clinical practice'. All of a sudden the bill has no
teeth in it and because of that, I - rather than go
through this whole exercise, it becomes an exercise in
futility if we don't have any type of solid sentence
structure that we can point to that doesn't allow for
the purposes of diagnosing and detecting diseases.
CHAIR SEEKINS asked Senator Olson if an impairment or disorder
can be genetic.
SENATOR OLSON said either can.
CHAIR SEEKINS asked if a test to diagnose an impairment or
disorder could be a DNA analysis.
SENATOR OLSON said it could.
CHAIR SEEKINS asked, "So, in that case, DNA or RNA...or
chromosome test could be used to detect disorder or impairment
and would escape this loophole - am I correct or am I wrong -
escape the prohibition?"
SENATOR OLSON said [the proposed definition] is too broad in his
estimation.
CHAIR SEEKINS asked if impairment could be a predisposition.
SENATOR OLSON said all mortals have some kind of impairment and
disorder.
CHAIR SEEKINS commented that widens the loophole too much.
SENATOR FRENCH agreed and noted that switching to a genetic test
would mean a basic rewrite of the bill because the bill speaks
throughout about DNA analysis and the current definition is of a
DNA analysis.
CHAIR SEEKINS again said he is concerned about broadening the
definition.
SENATOR OGAN thanked Senator Olson for taking time from his
profession as a medical doctor to serve in the legislature.
CHAIR SEEKINS asked for the will of the committee.
SENATOR FRENCH moved CSSB 217(JUD), version I, and its attached
fiscal note from committee with individual recommendations.
CHAIR SEEKINS announced that without objection, the motion
carried.
SENATOR FRENCH moved the letter of intent from committee with
the noted grammatical corrections.
CHAIR SEEKINS announced that without objection, the motion
carried.
##
CHAIR SEEKINS announced a 5-minute at-ease.
#^HB31
#^HJR5
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